supapubic update

[MF31]

Peter is in A&E not having much luck as draining in bag but also coming out of penis and pours out penis when flushed through, he has small bladder and spasms so back to pads as well as the catheter. Now awaiting for a appointment in urology clinic maybe have botox to stop spasms.

[ReverendBadger]

Sorry to hear Peter is not doing too good after the op. Unfortunately the urethral leakage problem was rather predictable as a possibility and they should have warned you this might happen. Unless both sphincters remain reliably and tightly closed 24/7 you will get leakage via the penis. This is an inevitable result of God's hydraulic design and gravity !

A period of post-op recovery might see the sphincters go into closed mode but there is no guarantee. What you, and all those NHS people involved with Peter, have to remember is that Peter has a BRAIN dysfunction,and the bladder issues are a result of the brain control function going silly not a specific urological problem.

Ideally those with MSA and bladder problems need a neuro-urologist consultant. I tried finding one via BUPA and the nearest one to me was 326 miles away so these specialists are 1000+ rarer than people with MSA. People living in the USA probably do better as it's a larger country and the different health system can support more specialisms.

So here in the UK we have to become our own specialist. Applies to the carer too. Just keep remembering MSA is a brain (control system) dysfunction and try to make the point with NHS people when appropriate.

For Peter's current problem try suggesting a conveen plus collection bag. Personally I much prefer bag collection of urine to absorbant pads as it gives me better quality of life however I do appreciate that means Peter having 2 bags so it's a personal choice for both of you.

Bladder spasms are annoying, I have them. Like many symptoms with MSA they are intermittant, I have trained myself to be aware of and actually feel detruser (bladder muscle) contractions. when mine go active I get 3 short contractions. no where near enough to remove more than 50ml but enough to create pressure if I have an indwelling catheter and the tap closed i.e.not free draining into a bag. This does cause bypass leakage but usuallly quite small and dealt with via a pad.

Although my mobility and dexterity are significantly degraded by MSA I can cope with my own design of urinary management. One thing I have learned is the importance of keeping fluid intake up, aiming for 2 litres a day, and careful attention to keeping everything clean ! All within my capabilities and control right now but eventually I know this will have to be subcontracted.

Do keep us posted on Peter's progress and I wish you both all the luck I can in dealing with these difficult problems.

Ken.

[MF31 in reply to ReverendBadger]

Thank you for your reply, the drinking and eating with Peter is a huge problem as he not overly interested in either, waiting for peg though now I’m worrying are we going to have difficulty with this when it happens. Hope you continue to do well.